Dad advanced to AML

[626eer]

My dad saw a specialist at Hopkins and in the month since he was diagnosed with RAEB type II he has now advanced to AML (30% blasts in blood). This is very tough on us and he is now faced with the decision to undergo induction chemo or go the Vidaza route. We’ll stand behind him, but I honestly cannot see a clear cut best choice in modality. The Vidaza may be easier on him, but will be a longer wait to see if it takes. Any opinions?

[choijk]

I’m sorry that I don’t have any wisdom to share with you. But I just want you to know that we are here for you. Whatever decision you make for your father will always be the best decision. I know easier said than done, but try not to look back into those “what if’s” and any doubts you may be having when you make a decision. I will be praying for your father and for his road to recovery.

[sdrake]

I don’t have an answer for you either, but I can tell you my Dad did very well on Vidaza for nearly two and a half years. He had minimal side effects. Did your dad get any direction from his doctors on what they would suggest? Your father and your family will be in my prayers.

Shari

[Harold]

I will relate my own personal experience. I was on Vidaza for several years and it did keep my disease under control. Prior to Vidaza, I did try two other drugs briefly (Arsenic and an experimental drug, neither of which helped). However, once Vidaza stopped working, I underwent high dose induction chemotherapy. I tolerated the chemotherapy fine but 6 weeks after induction my disease had returned. So I think part of the answer may be how healthy you are today and what are your long term plans with regards to treatment. My doctors told me that the long period of treatment with Vidaza caused the disease to become more resistant to treatment with induction chemotherapy. I also believe your doctors should be the one to “strongly” suggest the right choice between these two options.

[jaxem]

626
just my 2 cents worth but also consider dacogen. both dacogen & vidaza are demethylating drugs. new optimistic trial results suggest that adding HDAC drugs w/ either dac or vid extend the effectivity of the treatment. any thinking about trying to cure his disease via “mini” transplant? he’s not that old to go for it. MRD (sibling), MUD (donor bank) or cord blood transplants are emerging with good statistics. start with good questions to your hematologist at Hopkins.

[maueenh]

My father also did well with Vidaza for about 10 months but he had MDS not AML at the time. Everyone responds differently to these drugs so it’s hard to tell which will be the right treatment.

Maureen

[626eer]

Thanks everyone, we appreciate your kind words and prayers. As you all know, this hits hard and we were not expecting the fast progression. He has two siblings that will be tested for possible transplant and for his numbers he is in quite good shape.

[brian mullan]

I am 74 years old and I was diagnosed with MDS four years ago. Six months ago my condition progressed to AML I opted for the standard AML chemotherapy treatment that is one induction therapy followed by two consolidation therapies. Before I commenced, my haemoglobin was 90 with weekly transfusions, WCC was .5, neutrophils .2 and platelets were 11 with twice weekly transfusions. I will give you the average range which we use in Australia as I note you add an extra decimal point in America, haemoglobin(125-175) WCC(3.5-10) neutrophils(1.5-6.5) platelets(150-400)
I was in hospital for four weeks with the induction therapy and then I had three weeks at home to recover, when I went back to hospital for the next treatment my counts were haemoglobin 111, platelets 99 and the WCC and neutrophils were still being controlled by neupogen injections.
With the first consolidation therapy, I was in hospital for three weeks and when I go back on Sunday it would have been six weeks at home after the treatment. The reason for the long gap was that my counts took a long time to recover and it is only in the last 10 days that my platelets have started to recover albeit very slowly, they are still only at 56 and the reason for this:-the cells that produced the platelets are not working correctly and the doctor said this would be caused by the pre-existing complaint I had which of course was MDS. My counts at the moment are haemoglobin 117 WCC 3.8 neutrophils 2.8 and platelets 56. So as you can see the counts are quite good except for the platelets, I am not having to use neupogen injections as the wcc and neutrophils have recovered on their own.
I go back to hospital on Sunday for the final consolidation therapy. At the moment I feel extremely well, with plenty of energy and with the help of the good Lord and my favourite Saint Philomena will be much better after the third therapy.
I don’t know if this has been any help to you and of course chemotherapy effects different people different ways. The doctor warned me before I started treatment that there is a 10% chance that you can die. I didn’t find it all that bad, fevers and rashes were my main problems but the consolidation treatment was much milder and I had very little trouble. One of the downsides was all the blood they use transfusing you during the treatment. I had 10 bags of blood and with the induction therapy and 14 bags of blood with the first consolidation therapy. So there are a lot of things you have to consider when making the decision and of course you don’t know what the end result will be either but I am more than happy with the decision I made. I hope that this information is of some help to you and whatever decision you make it is the right one.

God bless
Brian Mullan

[jaxem]

brian
glad to hear about your treatment & good results. your platelet count = 56 although 1/2 half of what they should be is good for a mds/aml patient. my wife is about the same age as you but hovers around 10 – 20 after treatment. platelet transfusion get her up into the 60 or so range but comes down rather quickly. she usually needs about one platelet transfusion/week. you never stated what your blast level was pre-aml (mds) and aml. any idea when they’re going to do another marrow biopsy? good luck to you & keep fighting!

[brian mullan]

Jack my blasts before aml were 22.6–After the Induction therapy were .3 and after the 1st consolidation therapy were .6–The next biopsy will be after the 2nd consolidation treatment which I go into hospital tomorrow for.Be out of commission for about 6 weeks now,let you know when I return.

Brian

[626eer]

Just an update. We met with the Docs here in Va. and Dad has chosen to do the induction chemotherapy. He’ll have a port put in in the morning and will be admitted on Friday to start the chemo. He’s a minister and was able to preach to his congregation today. It was a good day and I hope he has many more to come. Say a prayer for us as we begin this journey. I’ll post a link to the blog site later if anyone cares to look at that.

[brian mullan]

I have completed my 2nd round of consolidation treatment.It is now 90 days since I started the second round and things seem to be improving all the time.Haemoglobin 129 WCC 3.5 neutrophils 2.2 and platelets 72. the platelets have been particularly slow but seem to keep rising a few points every week.I had very little trouble with the second consolidation treatment.I had previously reported on the 30th of September the results of my induction and my first consolidation treatment.The good news is that I haven’t so well in years.

God Bless
Brian Mullan

[Author]

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